Jesse ~ re Right leg and E.M.G

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Jesse ~ re Right leg and E.M.G

Postby paranoid on November 21st, 2002, 2:35 pm

Hi again Jesse,
Just a reply from your question on the CPK post... felt it was slightly off topic so I decided to answer on a new thread. First, yes my leg feels the same, it feels strained or working harder to accomplish things like heel, toe walk. I mentioned this to the neuro but he didnt seemed concerned ~ he said his testing wasnt measuring whether it "felt" more difficult. Second, he referred me for an E.M.G on his own. I dont believe he originally planned to but at the end of the exam he had me walk away from him and he suddenly said "stop" He was noticing the very obvious ( what I feel is atrophy) on the back of my leg from behind the knee to mid calf. It resembles a long deep groove. I suppose it could be a sports injury as I have been told I have a muscle bulge and torn fascia so I suppose it could have displaced the muscle causing the groove. I dont believe he thought this was the case though as he started rambling about some nerve root problems being congenital and affecting certain areas. I, unfortunately was too worked up to really listen though now I wish I had. I only remember asking him if he thought I had A.L.S and he said "NO". That is what I have been hanging onto since that Oct 2nd appt. I was supposed to have the E.M.G and NCV last mon but now it is rescheduled for Dec16. I sometimes get worried again when I see the posts about Fascis being the only symptom but I am much better than I was. I tried Paxil to calm me but it drove me insane, and made my symptoms 200% worse so now I am trying to deal with this med free. I am taking B12 & Folic acid, Started going to a Chiropracter as well. These things seem to be helping. I am sleeping better and am twitching slightly less.
Now my question to you: Since our symptoms are so similar, do you have any irregularity or groove in your right leg? Does it cramp as well ? Have you tried anything that has helped reduce your symptoms.
Sorry for being long winded,
Sandy
paranoid
 

unsure

Postby jblack on November 21st, 2002, 6:25 pm

I don't think I have any "irregularity" like that. Though I'm sure I'll spend entirely too much time looking at it and imagining I do now ;-) My leg does get 'tight' and has cramped, but not a lot. I just spent five minutes toe and heel walking and looking at my calf after reading your post, and it actually feels alright today. Remember, no good and bad days with ALS... ;-)

I'm sure if there is a problem with your lower leg, it's not ALS. The odds of some much less serious muscle problem, or of BFS, are much higher. You know that. Try to believe it. I think one of the things your doctor said is worth holding onto: he wasn't looking to see how you "feel." I think that's pretty typical, from what I've read...ALS isn't a sensory phenomenon. It's a voluntary muscle control phenomenon. I don't think you or I really have any true weakness or loss of control showing. We have weird feelings being caused by misfiring muscles.

Sandy, I can imagine you have it tough while you wait, remember that the doctor is probably both being honest and correct. The odds of you having ALS are absolutely astronomical. For me too. Please let's do our best to have faith and look on the positive side -- you are almost certainly going to have a clean EMG in less than a month. Use this site as a place to remind you of those odds, and that there are a lot more people who get the fear than get ALS!

I'll try to believe if you will!

jesse.
jblack
Member
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Posts: 42
Joined: November 9th, 2002, 4:01 pm
Location: Stockholm

Postby paranoid on November 22nd, 2002, 7:36 am

Thanks Jesse for your reply. I'm really beyond the scare point now, just searching for things to alleviate the symptoms. Whether the things I have tried that work are all in my mind I dont really care as long as they help me. It is worth noting though that after visiting the Chiropracter I sometimes get wicked twitches and burning in my right leg and other times it feels great. This leads me to believe that at least some of my symptoms could stem from a slightly irritated nerve from being pinched somewhere, and I don't think its a placebo effect that I am sleeping better. That definitely started after starting the Chiro visits. We all know that getting sleep in its self makes the symptoms better.
Have a good day!
Sandy
paranoid
 

one way we're different, then...

Postby jblack on November 22nd, 2002, 1:05 pm

I have to say, while the area affected might be similar, I don't think our symptoms are that similar in terms of severity. Truth be told, my twitching and minor aches and weakness/fatigue don't actually bother me much. I think if I could get rid of the anxiety, I would hardly mind at all. So I haven't even really thought about symptom relief. For me it's all about knowing that this isn't something fatal! So I guess my last post may possibly have been directed more at me than you ;-)

I'm glad you're finding ways to approach yours that are helping. That's great that a chiro has some effect -- certainly seems like a sign that whatever you're feeling isn't caused by ALS! I don't think manipulating your spine would affect you if it was. My wife's been trying to get me to see a chiro for a while now...they just seem like such scam artists to me! But maybe if it helps you at times it could help me too.

Good luck Sandy, thoughts are with you.

jesse.
jblack
Member
Member
 
Posts: 42
Joined: November 9th, 2002, 4:01 pm
Location: Stockholm

Postby paranoid on November 22nd, 2002, 1:28 pm

Just a quick note...I was as skeptical as you about going to a Chiro ( still am to an extent) but my father and others swore by it and said it would fix me up. Well that hasnt happened but I honestly do feel better. Seeing as I am so skeptical, I actually believe it has really helped, at least a bit.
At least it isnt killing me to try!
Sandy
paranoid
 

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